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pRETTy happy. | Hope and Rett syndrome

pRETTy happy. | Hope and Rett syndrome

Auteur(s): Sarah and Sam
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Bringing families and friends together from the Rett syndrome community to discuss life, research, and just have fun. New episodes are released every other Monday morning ... or when life let's us have a break. lolSarah and Sam Relations Éducation des enfants
Épisodes
  • 57 | We're back!!!
    Aug 12 2024

    That's right, ladies and gentlemen - we are back at it and excited to begin connecting with others again!


    Acadia working to see Rett therapy Daybue approved in Japan, Europe

    • What great news for individuals with Rett syndrome across the world! We are hopeful that by making this drug more widely available to those that need, improvements will be able to be made for the betterment of all!


    Potential cancer drug slows Rett's progression, aids survival in mice

    • This news is also very exciting. It's always great to hear about progress being made in science to help individuals with Rett. In the end, these types of studies just help us better understand how Rett is. (And yes, I did mean to phrase it like that.)

    Give Back & Gear Up T-shirt Fundraiser!

    • We are excited to be partnering with ⁠Frankie Says Fight Rett⁠ to bring to you this great t-shirt! All funds from this sale will go to Frankie Says Fight Rett, a 501(c)3 non-profit that not only helps bring awareness to Rett syndrome, but also helps those in need with the expenses of traveling to medical appointments, receive adaptive equipment, helps provide respit for parents and caregivers. Support this fundraiser today by ⁠purchasing a t-shirt⁠ before it's too late - pre-orders end September 15, 2024.


    If you are a newly diagnosed family, you can find loads of information regarding Rett syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

    Subscribe today so that you never miss an episode. And we'll see you next time!

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    ⁠⁠⁠⁠Social Media, Podcast Platforms, & more!⁠⁠⁠⁠ - https://hopp.bio/prettyhappyplace

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    1 h et 25 min
  • A little update on us.
    May 15 2023

    We know it's been a minute since we released an episode - but we're still here.

    If you are a newly diagnosed family, you can find loads of information regarding Rett syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

    Subscribe today so that you never miss an episode. And we'll see you next time!


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    ⁠⁠⁠Social Media, Podcast Platforms, & more!⁠⁠⁠ - https://hopp.bio/prettyhappyplace

    Voir plus Voir moins
    3 min
  • 56 | Adapting toys is easy, Usree Bhattacharya talks linguistics, and more!
    Apr 17 2023

    We're excited to have you back for another great episode. On this episode, we talk with Usree Bhattacharya about her family's journey with Rett syndrome. But first, we share with you a little about how the pRETTy happy. shop can save you money on adapted toys.


    If you haven't already heard, our website - prettyhappy.place - has a shop on it! Many people have already purchased from the shop and are loving their toys! To check out the shop, just click here - https://www.prettyhappy.place/shop

    • Adapted Switches (3D printed w/ file) - https://www.prettyhappy.place/product-page/switch


    Usree Bhattacharya hails from Georgia, USA. Her daughter, Kalika, was diagnosed with Rett syndrome a few years back. Both Usree and her husband, Jonathan, have a passion for languages; we talk about how having a nonverbal child has helped shape their view of language. It's an amazing conversation and we're grateful to have had the chat. To connect with Usree, send her an email at usreeb@uga.edu.


    If you are a newly diagnosed family, you can find loads of information regarding Rett syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

    Subscribe today so that you never miss an episode. And we'll see you next time!

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    ⁠⁠Social Media, Podcast Platforms, & more!⁠⁠ - https://hopp.bio/prettyhappyplace

    ⁠⁠Send us a voice message⁠⁠ - https://podcasters.spotify.com/pod/show/prettyhappypod

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    1 h et 23 min

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